I never imagined how difficult it would be to keep up with a blog. With all of the irons I have in my fire, I just don't get to post as much as I would like. But, that is the life of a mom with a special needs child.
Hopefully, that will be changing soon. We bought a laptop for our other children to use to do their schoolwork, so maybe I will get my computer time back. I have also met several more moms with special kids, and that has motivated me to get back to work on this blog.
Today, I spent several hours researching what is called "blenderized feeding". The idea is that tube-fed children can be fed real foods and not just commercial formulas. I have posted links to the 2 sites I found to be most helpful in the Resources section to the right.
We tried to do a blenderized feeding today. I had tried it in the past without much success. The MicKey extension that we use to feed Stephen his formula was just too small for a bolus feeding. Also, I was using olive oil to grease the syringe. Today, I used the bolus extension, which is a bigger tube, and liquid soy lecithin to lube up the syringe. Administering was like night and day. It was so much smoother. Unfortunately, I gave him too much, too fast, and too soon after his last formula feeding. He threw every bit of it up. Yuk. I am not giving up though. Patience is the key with this. I may also cut back to just oatmeal and rice milk for the bolus.
I have also started a spread sheet to measure his nutrition intake. The first page lists each item we give him including supplements and water each day. The second is a caloric chart for the foods we intend to feed him. Since we are pureeing (like babyfood) his grains, veggies, fruit, etc., we calculated them by 1 oz. cubes. More on that in another post. The third page is a list of daily food intake requirements for his age. Some of the information came from the government's new food pyramid, and some came from the Kids with Tubes site in their letter regarding Nutrition for the Tube-Fed Child.
It is hard enough to make sure our typical kids are getting proper nutrition. And it can be agonizing trying to do the same for our special kids when we don't want to rely on commercial formulas. Help is out there, and we can do this. The most important thing we need to give these little blessings is love.